Enough Is Enough 2006

Sunday, July 23, 2006

Medicaid Madness...and Meanness

Or how I ended up having my monthly less-than-sustenance income cut almost in half.

I am receiving Social Security Disability Insurance benefits for systemic lupus and some other just-no-fun health conditions. This insurance program is abbreviated as SSDI. Contrary to popular myth, it is often NOT very easy even for people who are quite sick to get awarded SSDI, so kids, don't try this at home.

SSDI comes automatically with Medicare coverage, after a 2-year waiting period. I was told once by a government official that a lot of money is saved due to people dying in these 2 years. Don't have to pay benefits to dead people. However, I am long past my two years.

Until this year, when Medicare Part D was established, Medicare did not provide any prescription drug coverage. I was therefore very dependent on being accepted to my state's Medicaid Medically Needy program (known as Medically Needy Medi-Cal here in California) to pay for my long list of expensive monthly prescriptions. I am part of a local managed care program for this Medi-Cal coverage, which has to be re-applied for annually.

Since I now have the Medicare Part D, at least for this year (so far no one has been able to tell me what happens to me after December 2006), I am able to get my prescriptions through this program and Medi-Cal has stopped paying for my prescriptions. However, I am still dependent on Medi-Cal to pay for my Medicare-allowed copays for medical procedures. Since many medical procedures are expensive, this can add up to a not-inconsiderable amount of money.

This year, through no fault of my own, I lost "free" Medi-Cal. If this had happened last year, before Medicare Part D prescription coverage, I would be dead now, and as things are it is still going to be a hardship.

I lost the no-share-of-cost Medi-Cal coverage due to the annual cost-of-living increase in my federal SSDI benefits. This put my income very slightly above the limit for a program called the Aged, Blind, and Disabled Program which was allowing me to avoid having to pay a monthly deductible, or share-of-cost, for Medi-Cal coverage.

Unfortunately, the deductible I have to pay is not something reasonable like, for instance, the difference between the amount of benefit I was getting last year and what I am getting this year. Instead, Medi-Cal gives me a monthly allowance of only $600 per month -- less than people receive on the "welfare" program of SSI here in CA, which comes with no-share-of-cost Medi-Cal--and I have to pay for any medical expenses up to what would leave me with that $600 "maintenance" level of income before Medi-Cal will kick in and help me.

In California, I cannot live on $600 per month. Since it took me years to build a personal support system and to find good doctors who accept the coverage I have, moving is probably not an option. And, of course, there are states where Medicaid is not even as generous as California's.

I think I am still eligible for the special lower copays for my medications that I really need to have under Medicare Part D, as well as for the payment of my Medicare premiums, under a program called Qualifying Individuals (QI). But I confess to being concerned about eventually ending up being kicked out of that program as well. I have no control over the annual Social Security cost of living increases.

There IS recognition that people should not be put in positions like mine due to the Social Security cost-of-living increases. If I were receiving SSI, the disability benefits program for people who have not paid at all or as much into the Social Security system, and I lost Medi-Cal due to a cost-of-living increase, I would be protected from losing my no-share-of-cost Medi-Cal by the Pickle Amendment. Also, if Social Security had not decided a few years ago to switch my benefits from being partially funded by my deceased father's income (Adult Disabled Child benefits) to being fully funded by what is based on my own earnings, I would still be eligible for no-share-of-cost Medi-Cal. That these protections exist for some indicates to me that those of us on straight SSDI should have what is now quite a punishment under the law be changed to protect us as well from losing Medicaid due to cost-of-living increases.

While I am on the subject of SSDI, I want to mention that I personally find it deplorable that the rules for work attempts are so much more favorable under SSI than SSDI. I have heard many people on SSDI say that they are afraid of attempting to work as they know they would eventually lose their medical benefits, and with the U.S.'s present health care system, this can be fatal to a person with a severe illness. On SSI, you can work a certain amount in perpetuity and still keep your health benefits. This is not true for SSDI recipients. Since SSDI is the program for people who have actually paid into the Social Security system, it makes no sense to me that it has punitive elements other programs do not have.

I hope caring people feel free to share their feelings on the above problems with SSDI with their elected representatives.